Caring for Mum – one year on – many bridges crossed – many more to go...

This time last year, I’d just become Mum’s full time caregiver. Prior to that, I’d been a sort of part time carer, but wasn’t willing to admit it. The big question - where am I now?

At first I took on the role of primary caregiver, working alongside agency carers to help Mum. I even thought, that when the time came, I’d become an agency carer myself. Not now - I’ve learned so much from my caring role, and thanks to social media, I have met so many wonderful people, and I now know I’d be wasting the creative skills I already have.

By profession, I’m not a caregiver, I’m a designer. I’ve learned to use my design and creative skills, over the last twelve months, in a way I had never expected. I’ve also learned that my many years experience as a reservist soldier, have also proved to be very useful.

Twelve months on, the use of creativity in my caring role has increased, caring has become a reason to express further creativity, rather than suppressing it – something I would not have believed possible, just a year ago.

Military training has also been useful, facing adversity with confidence is difficult, and fighting for the rights of your caree, even more so – the army taught me not to be afraid, and face adversity without trepidation.

My beliefs are simple - I’m not religious, yet I believe in right and wrong. If you know you are right, stand your ground. If you know you are wrong, accept defeat with dignity, not humility. Be proud!

My blog has progressed over the last twelve months, and some of my earlier posts now seem quite naive, even to me. But, the blog serves as a history of my own journey, through what can only be described as the most difficult transition in my life.

My Mum - bless her - has been a guinea pig throughout all of this, and a very receptive one at that. As my caring role increased, and my creativity started to take over, Mum became the person with whom I tried out my various, sometimes hair-brained ideas. Fortunately, she enjoyed the experiences, and some are still in use to this day.

Her bedroom started as a simple, yet relatively bland, rectangular room. In the last year it has been transformed quite dramatically, initially using simple things like flowers and pictures, into what is now a dynamic mood enhancing environment, embracing everything that Mum likes.
Music, sounds, images, lights, textures and smells – a totally sensory environment, that can be adapted to her every mood, or to help calm her, when distressed.

Everything is chosen to enhance her sense of well being. Bedding is plain, but colourful, mainly pinks and purples – calming colours. No patterns are used, as these can cause confusion. Lighting is subdued, but colourful, along with a small full spectrum light, to help combat SAD, and, hopefully, maintain Circadian rhythms.

One of my early experiments is still in place, a digital photo frame used as a day/night clock, again to help maintain Circadian rhythms. The files have been free to download for quite some time, and at the last count, almost four hundred people, worldwide, have benefited from this simple, yet effective, system.

Another simple experiment was clothing. Mum spends most of her time in bed, yet rather than wearing traditional bedclothes, she wears kaftans. These are loose fitting, and are easy for carers to remove and replace. Unlike the classic, undignified hospital gown, kaftans are dignified, stylish, and just as easy to change. Most, being made of polyester, are also hygienic, easy to wash and dry, and are ideal as both bed wear and day wear.

Music plays an important role - music from Mum’s past, to popular classical style music by the likes of Andre Rieu. When watching an Andre Rieu concert, Mum becomes quite animated, and thoroughly enjoys herself. Later of an evening we may just sit and listen to music from the 1950s, which Mum finds relaxing, and is ideal as a preparation for sleep.

Feeding has undergone a number of experiments, from simple finger foods, to full blown meals. I have learned to prepare meals that are easy for her to eat, and although she can no longer eat such meals independently, they are tasty, and indeed home-made. Ready-meals, whilst essential for some who don’t have the same support as Mum, were ditched a long time ago. As for drinking, Mum now uses leak-proof sip cups, simply because she has a habit of just putting the cups down anywhere on her bed, and frequently upside-down. By maintaining a well balanced diet both for her, and for me for that matter, she no longer needs nutritional supplements.

Medication – when Mum first returned home from hospital, I tried to administer her pills with a drink. This proved to be difficult, as Mum has always had a problem swallowing pills. Pills are now administered with her breakfast – normally Weetabix with plenty of full-fat milk. Each pill is administered with a spoonful of well soaked Weetabix, and for the most part, this works very well.

Mum has, for the last year, been doubly incontinent. She has pads (diapers), which she wears all the time. When bowel movement is imminent, she needs to be hoisted on to the commode. The timing of this rarely coincides with a visit from one of the agency carers, so it is inevitably down to me, to get her on and off the commode, and make sure she is clean. The initial shock of having to carry out such a task has long gone – it is now just something I do.

Thanks to social media, I’m now in contact with many people who find themselves in similar situations, and not just in the UK, but around the world. I sometimes think of what it must have been like for carers in the days before we had such opportunities, and indeed what it must be like for older carers without internet access, or access to modern technology. Social media provides me with the opportunities to learn from others, share ideas, or just provide or receive advice and support. This ability to communicate with others has helped both me and Mum.

One year on, I’m now in a place I never expected to be, yet the experience has given me the motivation to help others like myself, and those people living with dementia, in any way I can. To use my former skills, in a new, and previously unexpected way, to help improve the quality of life for those living with dementia, and to help make the roles of their carers more manageable, and more rewarding.

My journey so far, has taught me many valuable things. By using my creative skills, I have been able to create a sensory environment for Mum, and the pleasure she gets from it all, fills me with joy. It is this joy, through adversity, that I’d like to share with as many others as I can.

Where I will be in another year? I just don’t know. I’m not yet in a position to be able to plan that far ahead. In fact, at the moment, I just take each day as it comes, and treasure every moment of joy and laughter...